Including Samuel

Welcome to the "On Balance" guest blog. Every Tuesday, "On Balance" features the views of a guest writer. It could be your neighbor, your boss, your most loved or hated poster from the blog, or you! Send me your original, unpublished entry (300 words or fewer) for consideration. Writers need to use their full names. Obviously, the topic should be something related to balancing your life.

Please note that this Guest Blog ran last Tuesday. Technical difficulties prevented many readers from seeing it. There is also an interview with Dan Habib and his wife Betsy McNamara in today's Washington Post Health section.

By Dan Habib

When Samuel was four years old, I sat at his hospital bedside as he lay in a medically-induced coma. He had developed pneumonia from complications following surgery. Samuel's neurologist, Dr. James Filiano, encouraged me to be a photojournalist in the midst of my fear. "You should document this," he said.

That moment pushed me in a new professional, and personal, direction.

"


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Samuel Habib sits on the lap of his father, Dan Habib, behind the steering wheel of his grandfather's sea plane as they prepare for a flight. (From the documentary film, Including Samuel, by Dan Habib.)

Samuel is now seven. He has cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair and it is difficult for him to talk. "Including Samuel", the 58-minute documentary film his doctor inspired me to create, is being released nationally this fall.

When Samuel was about a year old, my wife, Betsy, and I would stay up at night, comparing notes: What did Samuel do better that day? What did he do worse? We also have an older son, Isaiah, 11, but Samuel's disability tested our parenting skills in new ways. "How could he get a full education and go to college when he can't hold a pencil?" Betsy wondered.

Having Samuel forced me to look at my own prejudice. When I saw people who couldn't walk, or talk, what crept into my head? It's painful to admit, but I often saw them as less smart, less capable, and not worth getting to know. I began to wonder: is that how the world sees Samuel?

"Including Samuel" is built on our family's efforts to include him in our school, our community, our family -- in every aspect of our lives. Samuel's life is the central thread through the film, and I want viewers to learn a lot about him beyond the fact that he has a disability. He wrestles with his brother. He loves T-ball. He wants to be an astronaut when he grows up.

My experience is that parents of children with disabilities face a different balancing act. One big struggle is balancing time spent supporting a child with a disability vs. the family's other child(ren). Others include marshaling the time, energy and financial resources needed to manage a child's medical care and therapy, and the scarce resources left for yourself, your relationship with your spouse, and your work.

Samuel is only seven, and including him will probably be more and more challenging as he grows up. I also made this film to learn from the experiences of other people with disabilities who can look back on the choices they made, and their parents made, and how these choices affected their lives. "Including Samuel" also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff. The film chronicles the impact inclusion has not only on them, but also their families, educators, other students, and their communities as a whole.

Samuel brought the disability rights movement into our living room. Every day it brings new questions and explodes traditional conceptions of work/family balance. As Samuel grows up, what can we do to make sure that people see cerebral palsy as only one part of who he is? Can we continue to fully include him as he goes to middle and high school? What about the times when inclusion has to take a back seat, as Samuel misses weeks of school to get through another health crisis?

I don't know the answers to those questions right now. But I know that Samuel loves life. He's got a great smile and he's a die-hard Red Sox fan. He wants to keep up with his brother, and be a part of everything that we do. He will teach a lot of people, which is good because the world has a lot to learn.

My hope over time is that the film will inspire the public, especially anyone connected to education, to work towards inclusion in a more informed, balanced and innovative way. My hope today is that you will tell me about your perspective on, or experience with, "balancing" your life with a disability.


Dan Habib is an award-winning photojournalist and the photo editor at The Concord Monitor. He lives with his family in Concord, N.H.

Habib will be screening "Including Samuel" at the Avalon Theatre in Washington, D.C., on Thursday, Nov. 15th; an additional 5:30 showing has been added because the 8 p.m. screening is full. There is no charge for the film screening, but reservations are required.

"Including Samuel" is the 2007 winner of the Positive Images in Media Award from TASH, an international organization that advocates for the inclusion of people with disabilities. TASH is a co-sponsor, along with The Arc, of the November 15th screenings.

By Leslie Morgan Steiner |  November 6, 2007; 7:00 AM ET  | Category:  Guest Blogs
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Comments

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Sorry for the delay today, everyone.

Tech problems on the site (again!!!).

But hope you enjoy this Guest Blog. Our first regular Guest Blog with a photo! Hope to see some of you who live in the DC area at next week's free screening of Dan Habib's movie.

Posted by: leslie4 | November 6, 2007 10:43 AM

Wow, and god bless to you and your family. I wish you the best. Samuel looks like a great kid. I was a little confused. Did he get CP from his coma or something else? My balancing act is our 3 3/4 year old daugher has high functioning autism. She is actually doing quite well in her special preschool. She talks and can communicate her needs. She is starting to talk in sentences. But we go to more doctors appointments, IEPs and just live with the daily worry about her life. I thank God every day for how mild her condition is. Again, I wish you and your family the best.

Posted by: foamgnome | November 6, 2007 10:56 AM

Dan, You are so right that when there's a family member with a disability, the entire family becomes aware of the importance of the disability rights movement; even such simple things as curb cuts and wider doorways can make a huge difference in accessibility and mobility.

On a positive note, I'm optimistic that one of the benefits of the digital revolution is that some of what were formerly basic essential skills (like holding a pencil, as you cite) will no longer be prerequisites to learning -- thus vastly widening Samuel's educational opportunities as he grows up.

OTOH, I'm saddened to hear that you're letting your child grow up to be a Red Sox fan -- that just isn't right ;-)

Posted by: mehitabel | November 6, 2007 11:11 AM

At our son's recent birthday party I realized that one of the guests has a physical disability and I felt awkward about the three legged race that I had planned to hold. But I decided to just go ahead with it and said-- "whoever wants to race, please come to the starting line." The child didn't go, but there were a lot of kids that weren't interested so it wasn't like that child stood out. Did I do the right thing to go on with the race? any ideas on birthday games that will involve kids of all abilities? (I like active games rather than arts and crafts stuff at kids parties.)

Posted by: baby-work | November 6, 2007 11:16 AM

Dan is an amazing photog and a dedicated Dad. I can't wait to see the film. Using blogs is a smart way to get the word out Dan!

Posted by: anne.saunders | November 6, 2007 11:24 AM

I'll have to keep my eyes peeled for a screening in NC. It looks like a good documentary.

I love the idea of inclusion. So many people with disabilities are present but on the sidelines of many events in life. Like oberservers. I love the idea of them actively participating. One answer to that is more media coverage like documentaries and blockbuster movies. I think you're doing a good job, Dan, because you're trying to make your family's lives better while influencing your community. That's the most any of us can do.

Posted by: Meesh | November 6, 2007 11:51 AM

Great column! Since Samuel likes baseball, you might want to see if you have a Miracle League field near where you live.

http://www.miracleleague.com/

Miracle fields use a baseball diamond made out of a rubberized material, kind of like a giant mousepad. The bases are painted on, allowing wheelchairs and walkers to travel freely. The goal is for every kid to play baseball, no matter what their physical or mental disability is.

My husband, who also has cerebral palsy, is involved with our local field here in Michigan. In fact, he is the team announcer and really hams it up for the kids (he is blessed with no vocal problems and is, in fact, an ex-radio broadcaster).

Posted by: cjbriggs | November 6, 2007 12:02 PM

Boy, talk about an invitation to *RANT* and *SCREAM* about my older son's situation! Okay, I won't - saving my passion for our school district instead.

I really appreciate the importance of balancing the needs of a disabled child with the needs of the non-disabled sibling(s). DH and I often wonder if we're giving younger son as much of our time, our love, and our attention as we should.

Posted by: sue | November 6, 2007 12:06 PM

Off Topic but important today, please vote if you have an election today. As the old saying goes, "Vote early and vote often!"

To commerate this election day, I have put new verses to Matt's favorite song.


Marching to the Precinct
I'm with you are you're with me and
So we are all together,
So we are all together,
So we are all together
Vote for me, I'll vote for you and
So we will vote together
As we march along
Chorus:
We are marching to Precinct
Precinct, Precinct
We are marching to Precinct
Precinct, Precinct
We have the franchise, the franchise is good, and
So let us vote together, (3 times)
When we vote, it is a right, and
So we will vote together,
As we march along.

Posted by: Songster | November 6, 2007 12:14 PM

This is a great guest blog. I really enjoyed it and feel that the author took a big risk in doing this documentary and sharing her story on the blog. There is nothing more personal than our children and our family. I think it is so important to do this though, not only for Samuel and other children like him, but also for children like my daughter who sometimes don't know how to act or react to kids with disabilities. I try to teach her that everyone is different in their own way and to include everyone the best she can. I also tell her that if she has a question about someone she sees in public to wait until we are alone to ask me about them. Sometimes this works (she's three) and sometimes it doesn't.

Okay, I am going back to bed now. :) Fred, where are you. I have a question for friedia.

Posted by: Irishgirl | November 6, 2007 1:05 PM

Scary, how are you feeling? How is your little one?

Posted by: foamgnome | November 6, 2007 1:14 PM

Dan, Hang in there! I have a very dear friend who has CP. He is in a wheelchair but has not let that stop him from graduating from college and going on a mission trip to South America. He lives on his own with the aid of an assistant. All of this has come from years of fighting for it. He has guts and so does his big brother who saw to it that he was treated as "normal" when he could such as teenage outings to the ballpark without the parents. I continually realize what a teacher he has been to me as I deal with others who are physically challenged in life. I am very priviledged to be able to call both men my friends. Oh, and if you want to really watch me rant and rave, park in a handicap spot when you don't need it.

Posted by: pboston | November 6, 2007 1:20 PM

Hate the phrase "physically challenged." Stupid euphemisim.

Posted by: baby-work | November 6, 2007 1:31 PM

Thank you Dan for this guest blog. I can really sympathize, I have an 11 yo son with Bipolar and Aspergers (High functioning Autism) and an 8 yo daughter who seems 'normal' at this time. Being able to balance the time and attention between the kids is very hard and each is sure that Mommy loves the other best. I have found that honesty about the syndromes helps a great deal. Good luck!

Posted by: live_wire_mj | November 6, 2007 1:46 PM

Please, everyone, support organizations that aid families with members with CP.

Posted by: dc_ca_2004 | November 6, 2007 2:09 PM

Thank you very much for sharing your story and I will look for a way to see your documentary.

My daughter would have had CP due to a birthing accident, but she didn't actually make it. I often wonder what it would have been like to have a chance to raise her and stories like these are great to see. Thanks again!

Posted by: shandra_lemarath | November 6, 2007 2:16 PM

People make up names for it, "physically challanged", "handicapped", call it what you want, I just call myself blind. Strangers treat me like I'm stupid, but I have to admit, if I don't know what's going on around me, by definition, they are correct. Even so, I've noticed that there are 2 types of people, those who treat me like a human and consider that I'm handicapped, and those who treat me like I'm handicapped, and then consider that I'm human.

Tip of the day: Mothers please don't scold your children when they ask you why that person is using a cane (or is "different"). Kids have a natural curiousity, and those of us who are handicapped would rather have you explain how we cope with our daily challanges rather than get angry at a child for asking questions about things they don't know.

Posted by: DandyLion | November 6, 2007 3:20 PM

Dan, with all the bad press about uninvolved fathers, you are truly an example of a good father. Good luck to you and your family.

Posted by: pATRICK | November 6, 2007 3:46 PM

Dan and DandyLion, I wish you'd both discuss a bit the role that adaptive technology plays in a person being able to live a fuller life -- including some of the products under development that will make Sam's and Dandy's lives more productive in the near (and distant) future. Dandy, you have voice recognition software, as I recall, so I was wondering, do you type your replies or speak them into some sort of converter? I apologize if I'm acting too nosy.

Posted by: mehitabel | November 6, 2007 4:31 PM

Dan,

Thank you so much for posting your blog, and for your work with your important documentary. The world needs more like you!

My son, almost six, has dyspraxia (motor skill issue) and sensory-integration-dysfunction. After much back and forth, I can honestly say he is thriving in a mainstream Kinder classroom. It is amazing how much progress he has made with early intervention. He's advanced in many ways -- just not likely to play for the Red Sox :)

In our experience, the three toughest challenges of raising a child with a disability is (in an order that changes daily):
-- paying enough attention to his amazing sister;
-- negotiating with school districts and insurance companies (we DO NOT take care of our own in this country);
-- worrying about my son's future: will society acknowledge his amazing skills and see through his minor disability? Will he feel good about himself?

Please bring your documentary to San Francisco! Thanks and good luck to you.

Posted by: VoiceofReason5 | November 6, 2007 4:34 PM

Thanks for sharing your story about your son. When I was about 2, my parents became foster parents to a boy from a rural area who had CP. By living with us in the city, he could attend a school for children with disabilities. (This was in the 50s.) I don't remember thinking that he was different. He just was who he was and I enjoyed being with him. He went to college, became the editor of a magazine, married, wrote a book that was published, and now works with people who are blind-giving them advice on finding jobs and providing a website where they can share their stories. He has always been really innovative in finding ways to overcome any physical obstacles. I am grateful that my parents took him in because knowing him has enriched my life.

Posted by: foxtrot1 | November 6, 2007 4:36 PM

LESLIE,two posts pulled in one day? HMM, Something fishy is going on.

Posted by: pATRICK | November 6, 2007 5:35 PM

Dan,

Greetings from Atlanta -- you probably did not expect to hear from me in this forum!

I was touched by your piece about Samuel --he is very cute! We are experiencing challenges with our 4 year old son, Ryan. He has been diagnosed with autism and we are struggling to get him all of the therapy he needs. In a state like Georgia, it is quite a challenge and it doesn't help that the schools here are not at all equipped to deal with autism spectrum disorders. We hope that everyone is doing well and look forward to seeing your movie. All the best.

Ben

Posted by: bkogan | November 6, 2007 5:46 PM

Thank you for your post, and especially for raising the need "to work towards inclusion in a more informed, balanced and innovative way." Special education, and maybe education in general, has become very polarized by some advocates' pressure for complete inclusion, often without adequate training for school staff. There's no one answer for every child, but with an informed and open give-and-take between parents, educators and health professionals, we can work for a maximum of both inclusion and services for disabled kids.

Posted by: lpyle7935 | November 6, 2007 6:54 PM

very touching stories. thanks everyone.

Posted by: leslie4 | November 6, 2007 7:34 PM

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